To have and to hold: Identity and people with learning disabilities

Well, you can blame @neilmcrowther for this one. In a recent pithy blogpost (https://theindependentlivingdebate.wordpress.com/2015/01/08/home-is-the-scaffolding-of-the-self/ ), Neil posted a lovely quote from a chapter by Hilde Lindemann on the importance of home for honouring personhood. I was so struck by it that I dug out the chapter (in a book with the exciting but intimidating title of ‘Cognitive disability and its challenge to moral philosophy’, which has sat on my bookshelf for quite a while exuding a scary aura of cleverness), and it provided a way of making sense of so many things for me that I thought I’d share it. I’m aware that I have the enthusiasm of an ignorant newbie about this way of thinking, so apologies to those of you who are much better informed for whom this will be stating the bleedin’ obvious.

The chapter discusses identities as bundles of narratives, constructed by/for/with a person within social and material webs; how important the continual revision of these identities is; the importance of families, other people close to you and home in helping you ‘hold’ your identity when it feels under threat; and the conditions under which these identities can flourish or be constricted. Although the chapter is hooked on to a discussion of people with dementia and their families, it had a much wider relevance for me, with obvious connections to people with learning disabilities and, well, everyone really, including my own life and my family. In particular, it got me thinking about how the way services typically go about their business can do real violence to the identities of people with learning disabilities, their families and others who are intimately involved in helping to ‘hold’ people’s identities.

Because Hilde Lindemann expresses her thinking better than I can paraphrase it, I’ll quote extensively from her chapter and add in a few observations of my own about how they might be relevant to people with learning disabilities and those around them.

“In the sense in which I am using the term, an identity is a representation of a self. It consists of a tissue of stories, constructed from not only first-person but also many third-person perspectives, depicting the more important acts, experiences and relationships, and commitments that characterize a person and so allows that person and those around him to make sense of who he is. Because we change over time, some stories in the narrative tissue cease to depict us faithfully and – ideally – recede into the background, to be replaced with newer narratives that – again ideally – represent us more accurately” (p. 162).

I really like this way of thinking about identity, as it recognises that identity is not a property of individuals but is continually made (and remade) by a whole host of people and circumstances – it’s inherently relational. I also like how identity can be gradually reshaped over time, and how important it is to allow this to continually happen. Hopefully the attractiveness of this for thinking about people with learning disabilities is obvious, not least that it’s a way of thinking about identity that applies to everyone while comfortably encompassing people with learning disabilities.

“Families are the primary sites of identity formation, which often begins even before birth… They do this through material practices…that welcome the child into the family, but they also do it by weaving around the expected infant the stories that form its proto-identity. Mostly, these will be stories of relationship…but the tissue of stories will also contain master narratives – the familiar stories permeating our culture that serve as summaries of socially shared understandings” (Lindemann, 2010, p. 162).

Even at this stage, is this where the battle for identity starts for families, against professional attempts to constrict the child’s identity sometimes before he or she is even born? What messages do pre-natal screening programmes send to parents? And when professionals are ‘breaking’ sorry ‘sharing the news’, what are they saying to parents? All too often it seems to be “Don’t get your hopes up, get those unrealistic ideas out of your heads, don’t dream big, and get ready to knuckle down and be grateful for whatever support you get”.

What work are assessments doing, right from the off? Pinning an emergent identity to a restricted range of ‘skills’ that the child by definition isn’t very good at (with a professional always ‘pleasantly surprised’ if a child does ‘better than expected’ on one of these assessments)?

And what violence is being done by the way that ‘evidence’ and ‘facts’ are marshalled by professionals when talking to families? First, the ‘evidence’ is likely to be some way behind the reality (particularly if the evidence is gleaned from when professionals were trained) – a 20 year old medical textbook is likely to talk about people with Down’s syndrome rarely surviving through to adulthood, whereas an important health issue for people with Down’s syndrome now is early onset dementia. This matters because the evidence will always be relatively pessimistic and serve to constrict and disrupt the weaving of identities from very early on. And of course this evidential pessimism is self-fulfilling – for example using ‘evidence’ of a short lifespan to deny the heart surgery that would considerably extend a child’s life. Next, this ‘evidence’ is always an aggregate or is turned  into expectations about a ‘typical’ disabled child, when we all know that there’s no such thing as anyone being a typical anything – but again reinforcing a restrictive expectation.

“Two kinds of stories are required to represent selves that are continually growing and changing even as in some respects they remain the same. The first kind is backward-looking; these stories depict who someone is by offering a causal explanation (“She’s feisty, all right. Even in the womb she kicked like she meant it”). The second is forward-looking; these set the person’s future field of action (“When you’re older you’ll be a good speller just like Charlotte, only without the web”). (Lindemann, 2010, p. 162).

It feels to me that professionals and services often deny all these aspects of changing identities when it comes to people with learning disabilities (and their families, for that matter). Backward-looking aspects of a person’s identity are denied by the person being fixed in a perpetual present based on assessment and only paying attention to people’s behaviour in relation to those professionals and services (“You say she’s not like that at home? Well let’s get her in for an assessment and see what’s really going on” – Mark Neary’s latest blogpost makes this point very eloquently https://markneary1dotcom1.wordpress.com/2015/01/24/trouble-for-humans/ ). Forward-looking aspects of identity (@sarasiobhan’s “imagined futures”) are often systematically ignored, or only attended to in the narrowest of terms (“Which service will they go to next?”). And parents are often treated similarly, as more or less malfunctioning state-support-relieving machines that only need maintenance when they’re close to breaking down (“What’s that horrible screeching noise? A bit of Respite-D-40 will sort that”).

“Our identities matter morally because they function as counters in our social transactions, in that they convey understandings of both what we are expected to do and how others may or must treat  us.” (Lindemann, 2010, p. 163).

I wonder how professionals would respond if you asked them what a person with learning disabilities was like as a person, and what their  understanding was of the person’s hopes and dreams? I’d wager that many professionals would be a bit stumped at first, then the better ones would be able to say something meaningful with the caveat that this way of talking about the person wasn’t really professionally allowed so it would just be their view ‘as a person’ or something similar. Is the identity of a person with learning disabilities solely a ‘service user’, ‘client’ or ‘consumer’? What about a fun-loving guy, a hard worker, a person so kind they’d do anything for you, a woman who loves, loves, loves music, a fighter for justice, a daughter, brother, mother, uncle? Why are these on principle written out of the service story about a person?

This is where person-centred planning, circles of support, one-page profiles and personalised support have the potential to be so radically different – all these could be seen as ways of trying to offer support to a person (and those around them) that start from that person’s identity, built with the person and those close to her or him, at home with material markers of identity present. They also have the potential to encourage the continual development of the person’s identity over time rather than fixing a person at a particular point in their life. But I suspect for many people and their families person-centred planning or personalisation just doesn’t happen like this, and preserving their radical features feels like walking against the blast in a wind tunnel pushing you towards the giant identity mincer of restrictive ‘traditional’ service cultures. And as a worker in a service, if you really ‘get’ someone, you can be accused of being “too friendly” or “blurring your professional boundaries”.

“Just as families are primarily responsible for initially constructing the child’s identity, so too they are primarily responsible for holding the child in it. They do this by treating him in accordance with their narrative sense of him, and in so doing they reinforce those stories. But identity maintenance also involves weeding out the stories that no longer fit and constructing new ones that do. It’s in endorsing, testing, refining, discarding, and adding stories, and then acting on the basis of that ongoing narrative work, that families do their part to keep the child’s identity growing.” (p. 163).

As I’ve mentioned above, it seems to me that professionals and services can be quite bad at supporting the continual development of a person’s identity over time. First, by denying important dimensions of a person’s identity altogether, or restricting/replacing it with an impoverished vocabulary/identity of skills and behaviours. Second, by fixing a person in a perpetual present. Third, by not recognising change in identities over time (either by weeding out aspects of identity that are no longer relevant or by recognising emergent aspects of identity). And finally, by not encouraging the experiences and relationships that would allow new aspects of identity to grow.

“As she grows, the child contributes more and more to this process herself, as do her playmates, teachers, neighbors, and the others she encounters in her life. And just as important, these others challenge her, interrupt certain patterns of behaviour, encourage self-transformations of various kinds, help or force her to grow in particular directions… But when the kids at school call her names, when he older brother tells her she’s adopted, when she doesn’t pass the exam – when, in short, her grip on herself is temporarily shaky, what she needs most is to be held in her identity. It is then that the adults in her immediate family have the special job of reminding her, by how they interact with her, of who she really is” (p. 163).

I think there’s an awful lot in this short quote that is really important for people with learning disabilities. In segregated schools and services, what emergent identities are shaped by teachers and playmates? Do other people (in the street, at the cinema, at the swimming pool) encourage exploration and self-transformation? Or are interpersonal environments for people with learning disabilities on the whole at best restrictive in identity terms (“Best if you don’t try that dear”) and at worst actively hostile. And in a largely restrictive and possibly hostile social world, this places a huge responsibility on families (especially if they’re not being supported in this by professionals) to hold the person in his or her identity.

“It’s not only other people who hold us in our identities. Familiar places and things, beloved objects, pets, cherished rituals, one’s own bed or favourite shirt, can and do help us to maintain our sense of self. And it is no accident that much of this kind of holding goes on in the place where our families are: at home” (pp. 163-164).

When I read this quote, the inhuman practices when people are sent to inpatient units really struck me with some force. As @MarkNeary1 has said so clearly, the practice of sending someone who is already distressed to a place with absolutely no material markers of your identity (even your favourite shirt might be shrunk, lost or given to someone else out of the laundry), together with an insistence that you cannot see your family (possibly the only people who can hold you in your identity when it’s under such threat) while you ‘settle in’, can only be seen as a deliberate attempt to break down a person’s identity completely.

“Good holding usually requires that the stories constituting the identity keep open the person’s field of action, for this is how the narrative tissue captures the way in which selves are continually moving targets. One set of stories that closes down that field are the hateful or dismissive master narratives used by the members of a dominant social group to justify their oppression of another, less powerful group. These identities… unjustly constrict the agency of those who bear them… Good holding requires us to weed out these oppressive narratives from the stories we use to identify anyone. There is another set of stories that constrict people’s agency. By contrast to morally degrading master narratives that misrepresent entire classes of people, individually constricting stories might be both true and correctly proportionate but fail to hold well because they look only backward and never ahead. When we interact with someone solely on the basis of these stories, we impede the person’s ability to change” (p. 165).

This post is already very long so I don’t want to labour the point here, but it’s clear that people with learning disabilities and their families operate in a society where the ‘master narratives’ are designed to severely restrict people’s field of action, whether in the name of caring, indifference or hostility. Helping your child to grow in their identity is a minute-by-minute tightrope for any parent (or maybe that’s just me?) – for parents of a child with learning disabilities, why does it have to be made a lifelong act of resistance?

Reference

Lindemann, H. (2010). Holding one another (well, wrongly, clumsily) in a time of dementia. In E.F. Kittay & L. Carlson (eds.), Cognitive disability and its challenge to moral philosophy (pp. 161-169). Chichester: Wiley-Blackwell.